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Healthcare Reform Then and Now

What American History Can Tell Us about Health and Social Change

Today, health and healthcare are hotly debated political issues. We are also witnessing a resurgence of civil rights movements that call attention to race, gender, sexuality, ability, age, and structural inequality. American history shows us, though, that grassroots, patient-centered change actually flourishes in times of concentrated civil rights activity. What we can learn from this history is that health is not merely an objective state of physical being. It is also, and perhaps first and foremost, a lived experience in a political, economic, and social climate.

During periods of intense political and social change in the U.S., health reform has been at its most active. Civil rights reform especially flourished in two eras separated by a century: the antebellum period (ca. 1830-1860) and the Cold War decades (ca. 1945-1975). During these periods, civil rights movements changed peoples’ relationships to their bodies while also challenging institutional medicine. These times of intense and even radical reform help give us perspective on our present moment—a time when there is a growing awareness of health and healthcare as socially- and politically-charged experiences.

A remarkably similar intertwining of civil and health reform movements occurred in the pre-Civil War and post-World War II eras in the United States. Both periods had “free love” movements, communes, activism for the rights of oppressed groups, including African Americans, Native Americans, and women, and alternative medical approaches, such as homeopathy and herbal medicine.

Additionally, new and heightened forms of consciousness emerged in each era (Spiritualism and mesmerism in the 1840s, psychedelia and meditation in the 1960s) to counter unilateral forms of authority in law, medicine, and government. The alternative therapeutics that flourished in these eras tended to favor healing processes over invasive “cures”; gentle, restorative, and easily available techniques or medicines were preferred over doctors’ heroic* interventions, which included any number of procedures from mercury dosing and bloodletting in the nineteenth century to harsh drug regimens like Haldol, an antipsychotic with severe side effects, in the twentieth.

The Nineteenth Century

Amy Post (1802-1889) and her network of activists in Rochester, New York offer a prime example of the way that promoters of civil rights and health reformers often share similar views about the improvement of others’ well-being. Post enacted grassroots change as an abolitionist and Underground Railroad conductor. In 1848, she also helped begin the women’s rights movement in Seneca Falls. Around that time, she befriended Harriet Jacobs, a self-emancipated enslaved woman, and encouraged her to write about her experience of sexual harassment and the ways that the institution of slavery harmed the health of enslaved people.

Post and her friends were ardent health reformers who were critical of doctors’ dangerous bleed-and-purge techniques. They supported dress reform that released women from bone- and organ-crushing corsets and created an informal health collective by sharing knowledge about common illnesses, injuries, and childbirth. Amy and her husband Isaac were also the first proponents of Spiritualism, a method of communicating with the dead through mediums. In these sessions, they often consulted deceased family members for diagnosis and home remedies. Post’s network was part of a larger movement of organized reform that sought alternatives for social and political oppression, which almost always involved promoting changes that improved health.

The Twentieth Century

Like the abolition and early women’s rights movements, the Civil Rights movement of the 1950s and 1960s also brought together people of diverse backgrounds to end segregation and barriers to voting, to gain social and economic rights for people of color and women, and to call attention to health disparities between privileged and marginalized groups. Activism diversified in the next two decades: second-wave feminism gained momentum, followed by the American Indian Movement, veterans’ and disability rights movements, and gay liberation. Each of these movements conceptualized social and political oppression as a factor that threatened the health and well-being of certain groups. In this way, the reformers of this era were continuing the work of their nineteenth-century predecessors.

In the Civil Rights era, reformers took collective action to address health threats imposed by structural oppression. For example, the Black Panthers implemented community-based medical services for African Americans such as free clinics, screenings, and ambulance service. Feminists began the Boston Women’s Health Collective and circulated shared knowledge about women’s health in a project that eventually became the book Our Bodies, Ourselves. Reform-oriented physicians organized to provide care during peaceful protests that often provoked violence from police and bystanders. For example, the Medical Committee for Human Rights served injured protesters. Young doctors such as Fitzhugh Mullan transformed their commitment to Civil Rights into reforming medical education and helping residency programs to meet the self-articulated needs of the impoverished communities they often served.

Bodily harm was impossible to ignore in this era: television and photojournalism broadcast such distressing images as activist Amelia Boynton lying beaten unconscious during the police attack on Dr. King’s march into Selma. Popular literature and music amplified political activism, calling attention to the bodily and psychological harm of oppression and war. The legacy of televised violence and protest are with us today, for example, in the Ferguson footage and in such demonstrations as Die-Ins by Black Lives Matter demonstrators. Medical students and doctors are participating with a White Coats 4 Black Lives movement in real time and through Twitter. Like the Medical Committee for Human Rights, the campaign recognizes the physical and psychological harm of race-based violence.

In the 1960s, reactions to the “illness” of a conflicted society found its way into experimental music such as the ambient sounds of war captured by Jimi Hendrix in his version of the Star-Spangled Banner. Anti-establishment fiction found resonance with Americans: Ken Kesey’s One Flew Over the Cuckoo’s Nest, an anti-medicalization story set in a psychiatric hospital, became a bestseller and a Broadway hit starring Kirk Douglas.

In 1962, a psychiatric hospital survivor of heavy antipsychotic and electro-convulsive treatments, Richard Price, co-founded the Esalen Institute. This retreat in California promoted mind-body health through workshops in meditation, yoga, and new forms of group psychotherapy aimed at transforming oppressive relationships between people and between groups and it still exists today.

These and other alternatives to mainstream medicine, such as a resurgence of homeopathy and herbal medicines, became more widespread at the time. Changes in views of health and social oppression helped create significant political changes such as the Voting Rights Act (1965) and the establishment of Medicaid (1965) and Medicare (1966), which extended healthcare to impoverished and aging Americans, respectively. In this era, too, the first independent medical ethics research organization, the Hastings Center, was founded (1969).

Today

In the present day, the question of whether healthcare is a universal right for all Americans is still hotly debated. Politically, the Affordable Care Act extends healthcare to more Americans than ever before—a significant advance for a nation that has the highest cost of healthcare in the world.

This legislation, however, does not benefit the entire US population and it also varies in coverage from state to state. All Americans, regardless of wealth, are directly or indirectly affected by limited healthcare access and the high costs of healthcare. The lucrative private insurance industry and its elaborate administrative system help to maintain these barriers.

Americans are becoming more and more aware of these challenges. For example, the documentary The Waiting Room tells the stories of disenfranchised patients at a struggling community hospital in the Bay Area. Attention to the human side of policy and social factors affecting medical care is also growing; the government funds research into health disparities and in many medical schools, bioethics and humanities training is required.

Health humanities, an interdisciplinary field that approaches illness, health, and dying through the lenses of philosophy, literature, the arts, religious studies, gender studies, and other humanities fields, is especially flourishing. At the college level, we are seeing the most dramatic growth in this field: the number of schools offering majors and minors has quadrupled since 2000. These programs aim to prepare future providers to consider health and healthcare from the perspectives of diverse people and their contexts, which, one could argue, continues the work of American activists from Amy Post to the Black Panthers.

Our present moment is also one of intertwined civil and health reform. Since the Civil Rights era, patient narratives have become prolific; they voice the lived realities and social implications of illness, such as Gilda Radner’s memoir of ovarian cancer It’s Always Something. Today, healthcare providers have joined the conversation, such as surgeon Atul Gawande, who meditates on the uncertainty of daily patient care in Complications, and Dr. Paul Kalanithi, who candidly describes his own cancer in his memoir When Breath Becomes Air.

The cultural and political climate of an era influences its ideas about health. Americans have demonstrated this connection since the founding of the nation. Remarkably, grassroots, patient-centered change flourishes in times of concentrated civil rights activity.

What these changes reveal is that health is not merely an objective state of physical being. It is also, and perhaps first and foremost, a lived experience in a political, economic, and social climate that differs for individuals, and this understanding is gaining momentum in our culture right now.

Sarah Berry, Ph.D. is a Health Humanities educator, scholar, and member of the editorial board of Vital. She is working on a book titled Patient Revolutions: Alternative Health, Literature, and Civil Reform, 1840-1975.

Footnotes

* Called “heroic” because of the endurance required of the patient, whose body was already weakened by illness.

Drawing on a philosophy that all illness was caused by imbalance in the natural equilibrium of the body, dramatic purging and bloodletting was believed to quickly restore the patient to balance and health. Patients in America and Europe resisted and doubted the efficacy of these treatments despite their persistent use by academic physicians from the Enlightenment until near the end of the nineteenth century when pathology, diagnosis, and germ theory eventually gained traction.

The concept of heroic medicine still resonates with extremely harsh treatments such as first-generation neuroleptics and chemotherapy.